Shane Patrick Boyle died on March 18th, 2017, from Type I Diabetes. Not from late-in-life complications from the disease, or from some unexpected situation—Boyle died because he was $50 short of reaching his $750 GoFundMe goal to pay for a month's supply of insulin, the drug necessary to keep diabetics alive. After presumably stretching the meds he had as long as they could possibly go, he developed diabetic ketoacidosis (DKA), a fatal complication that results from the body being unable to move glucose out of the blood and into cells, where it's needed.
Boyle had recently relocated from Houston, Texas, to Mena, Arkansas, so he could be with his ailing mother Judith, who died a week before Shane did. By crossing state lines, he lost his prescription benefits. The cause of his death, really, was complications from waiting for his new healthcare status to be approved.
When you're on an ACA plan without an out-of-state network, you can only use their insurance for emergency or urgent care, not prescriptions, says Obianuju Helen Okoye, a public health physician and healthcare consultant in St. Louis, Missouri. Even when people think their plan has out-of-state coverage, that isn't always the case, since multi-state plans "don't necessarily have network providers or cover services in multiple states," according to healthcare.gov. In both of these scenarios, patients pay for prescriptions like insulin out of pocket.
Type 1 diabetes, which according to the CDC accounts for about 5 percent of all diagnosed cases of diabetes, is an autoimmune condition in which the body attacks and destroys the insulin-producing beta cells of the pancreas. Because their bodies cannot make insulin, type 1 diabetics require insulin prescriptions to live (in some extreme cases this is true for type 2 patients as well). Here's how Boyle himself put it in a 2015 interview he did with Zine Fest Houston, an event he founded:
For me, the most important invention of the last 30 years was the insulin pen, invented exactly 30 years ago. As a type 1 diabetic, I need insulin or I will die. I have a long-lasting insulin I take before bed and a fast-acting insulin I take before meals and whenever my blood sugar gets high. When I use insulin in vials, I have to keep them refrigerated, they break easily, and they can't be re-capped. I also have to carry syringes to draw the insulin out of the vials, and when cops or security searched me, they would often find the syringes and assume they were for drugs. The pens are much more portable, don't require refrigeration after they are opened, and are virtually unbreakable. They are expensive as hell, even with insurance, but when I can get them, insulin pens allow me so much more freedom than insulin in vials. I can carry insulin with me anywhere without needing a cooler. I can go on long distance bike rides, take trips on the Greyhound or spend a week traveling and staying in hostels.
According to his GoFundMe page (the multiple family members and friends we reached out to for this story have yet to reply), Boyle did what many type 1 diabetics have been forced to do in an attempt to survive: As he waited to fill his expensive prescription, he rationed what he had left, stretching it by taking smaller doses. "No doctor would recommend such a thing, but unfortunately, people who have difficulty affording insulin can go to extremes," explains Robert A. Gabbay, the Chief Medical Officer and Senior Vice President at Joslin Diabetes Center in Boston. Gabbay goes on to explain that when type 1 diabetics "take less insulin than they need, at the expense of having higher blood sugars… glucose rises significantly and in an attempt to find alternate fuels for the brain, keto acids are formed which are potentially toxic and lower the body's pH." DKA, "when left untreated, can be lethal," and can set in quickly. "In the absence of insulin a person might get DKA within 24 hours," Gabbay says.
Even though insulin access is literally life or death for all type 1 and some type 2 diabetics, prices have steadily risen over the past 95 years. According to an international survey of type 1 diabetics conducted in March 2016, the average out-of-pocket monthly cost of diabetes in the US is $360, with a single vial of Novolog insulin costing between $14 and $300 and a vial of Humalog insulin priced at $435. "Each person has different insulin requirements… for some people, one vial a month may be enough; for others several vials are needed," Gabbay says. The amount of insulin a diabetic uses daily can fluctuate depending on a number of factors, like whether they're sick, stressed, or on their period.
With its pre-existing condition coverage, the passing of the ACA meant that insurance providers in the US were no longer able to deny diabetics coverage or treatment. While this was a positive step forward, moving toward coverage for all diabetics, it didn't solve the issue of insulin insecurity. Insurance companies still control how much insulin patients receive, often determining the amount by using a rough average across diabetics even though the amount needed varies from person to person and a single patient's needs can fluctuate from month to month.
"It's like someone saying 'hey, you can only breathe this much air today,' and then them shoving their fingers in their ears and going LALALALA when you tell them you need air to live," says Samantha Caviness, whose insurance would only give her 21 days' worth of insulin a month unless she changed to a mail-order pharmacy, a potentially risky proposition since insulin must stay cold and the glass vials could easily be broken during shipping. Since her doctor wasn't allowed to prescribe her more, she "started begging [at the] doctor's office for samples," learning what day of the month pharmaceutical representatives would drop them off. When her supply ran low, Caviness found expired insulin pens and used syringes to extract insulin and put it in her pump since she was unable to afford buying a new vial.
"If I had to pay retail for [insulin] I don't think I would be able to pay for it," says Breeann Wargo, who was diagnosed with type 1 diabetes when she was 6 years old. Unbeknownst to her, when she joined her work's insurance policy her prescription decreased, causing her to enter a "very time-consuming process" to try to receive more than the limit her insurance company had set. When patients only have a limited amount of insulin, these lengthy insurance battles can be dangerous, especially since the process isn't always clear. "I didn't know what I was going to do if I ran out," Wargo remembers. "By the end of it, I had no bottles left—and thankfully found half a bottle in my travel case I was able to use. I would fill my pump up and use it all the way until it said 0, [which] can be risky because there can be more air bubbles toward the end."
Like Wargo and Caviness, Brandy Wilson has also needed to find ways to make insulin last longer, wearing her pump for five or six days rather than the recommended three, in order "to use all of the insulin and not have to use as many supplies." When she learned that she was going to lose insurance because of a job change, Wilson began hoarding insulin, getting samples from her endocrinologist and having her doctor write scripts for more than she could use. The following year, under an ACA plan, she used the insulin she had stockpiled, saying of her experience: "you are paying $300+ a month for [ACA] health insurance that doesn't cover prescriptions until you reach your deductible, which is a few thousand dollars… [after the first year] I realized that it was cheaper for me [to be uninsured and] to purchase insulin out of pocket and just chance getting sick."
Novolin, an older and cheaper kind of insulin available at Walmart, is often pointed to as a cost-effective solution for diabetics, but according to Gabbay, "some patients just don't manage their diabetes best using these older insulins." In Caviness's experience they work too slowly, meaning she has to pay for and use more than her usual amount, making them still an expensive option. Regarding different brands of insulin, "insurance can dictate what is or isn't covered," Caviness says, even though "people can be allergic or [not] react well to one or the other." When Wargo's insurance changed her brand of insulin, it proved to be "quite the transition," causing her blood sugar numbers to fluctuate.
There are assistance programs for diabetics, but according to Wilson they can be difficult to find, since companies don't advertise them. She also spoke about the "few free clinics that help people with medications…[where] you have to go sit for hours…and go twice a month, which would cause you to miss work," meaning in the end that, "it really isn't helpful at all."
In sharing their experiences, all three women pointed to the potential physical dangers of going without insulin and the mental stress of not knowing if they'd have enough insulin to last the month. "I've cried so many times over what might happen to me if I can't afford insulin, and I cry for those who can't," says Caviness, who, despite her battles with her insurance company, still considers herself lucky compared to many other diabetics.
In November, Senator Bernie Sanders called for a federal investigation into suspected collusion in the pricing of insulin, and in January Donald Trump accused the entire pharmaceutical industry of "getting away with murder," a statement Sanders agreed with, though in a tweet he still wondered if "Trump and Republicans [had] the guts to police drug companies and lower prices." Though Republicans failed to repeal the ACA last month, Health and Human Services Secretary Tom Price has expressed plans to dismantle parts of the act by narrowing what it currently defines as "essential benefits" in coverage. Some diabetics fear this will cut their prescription coverage entirely.
As concerns about insulin availability have increased, paired with the fear of rising prices, advocates have sought to bring attention to this often-invisible issue by using #insulin4all across social media platforms. Insulin access is a topic discussed frequently within the diabetic community, but outside of it there is often little awareness of how serious insulin stretching can be.
Boyle's story represents the tragic outcome of inaccessible healthcare and the severe consequences type 1 diabetics who go without insulin face. Unfortunately, his experience is not unique.
Unable to afford access to healthcare, people are turning to alternatives like crowdsourcing platforms to fill in the gaps left by insurance companies and current policies. As of press time, a global GoFundMe search yielded 19,281 results for people seeking money to help pay for diabetes-related care, with 1,365,758 results for others crowdsourcing to raise money to help cover medical costs. Under a GOP healthcare plan, those numbers only threaten to rise. Not everyone reaches their goal, and sometimes the money arrives too late.
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